Pain that arrives one day and is gone the next

Mat48

This is my first post on this site so I'll try and be as general as I can. I'm 48 and I started having pains in my joints last winter. There was no visible swelling or redness and it started in my knees and wrists and then pretty soon was moving about so one day my foot would be agony and the next day it would be my little finger on the other side. My hands are the parts of me that have been sore for the longest and if it's not all out pain and stiffness it is a dull ache in the background. They feel much weaker than they used to and are my life because I'm an embroidery artist by profession.

I went to the doctor's back in March/ April and after various avenues such as carpal tunnel. RSI, wear and tear and post-viral arthritis my GP decided that it was probably RA, based on my having a positive rheumatoid factor and a raised ESR (60?) and a family history of autoimmune diseases. Because my periods had ceased a year earlier it was assumed that I was post menopausal.

When at last I got to see the rheumatologist after 4 anxious months - I had tried Sulphasalazine - but become allergic to it and had a steroid injection, which got rid of the small amount of visible swelling and eliminated the stiffness totally - but otherwise the pain continued to escalate - especially in my hands.

The consultant said that it was inconclusive and took an anti-ccp blood test and a chest x-ray and I will see him again in November. Since then I've had weeks when the pain has been terrible and seems to arrive somewhere like a shoulder and then disappear completely.

I've never had the results of the anti-ccp test but my GP says I'll get told them in November at the next consultation. I suppose if it had been positive they would have let my GP know?

And then the pains all disappeared at the same time as a period unexpectedly turned up after a year and a half of nothing and it was decided that I was still peri-menopausal after all.

So I decided that the pain must have all been menopausal/ hormonal as this is one of the symptoms of the change I read. I went onto the Menopause Matters forum and asked if others had had this deep heat in their feet, calves, knees hands, wrists and shoulders - perhaps a bizarre king of hot flush? But no - all the talk was of women's bits and HRT and mood swings and no one else had had the deep heat in joints or limbs.

But now the pain has returned - along with the deep raging internal heat in limbs and joints. So far I've had both knees in severe pain for 2 days (now almost vanished) - I couldn't navigate the stairs and had to go down on my bum and up clutching the bannister crab like. One knee swelled up and went red but all had gone the following morning. Then came a day of excruciating pain in my right wrist yesterday - to the point where i couldn't turn the key in our car's ignition or chop food on my plate etc.

But this morning I woke up and once again the pain has vanished leaving only some residual stiffness but no other trace apart from to my sanity?! And this morning I was able to go to my Tai Chi class without feeling a twinge. If I tell people (doctors especially) afterwards I feel like they think I'm imagining it, but when it's bad it is really SO bad that I can be incapacitated by it. And after 9 months I keep thinking I've got the measure of when and where to expect it to surface, or that its finally gone away entirely and it was just a bad dream - but then it rudely returns taking me by surprise?

Does this sound like RA, OA or something completely other - or is it all in my head I'm wondering? I do get very tired (mainly from being woken in the night) but don't have the systemic flu-like symptoms or chronic fatigue that RA sufferers talk of. And without these visible signs and with it coming and going in different joints I feel as though I'm going completely mad :green

Your suggestions and advice on where this might lead and what I should do about it all would be so helpful if anyone has any based on your own experiences? I'll make lemonade once I know that it's lemons that I've got! Mat48

dreamdaisy

Hi mat, it's nice to meet you and yes, you are having a rough time aren't you? The good news is that you are already under a rheumatologist but you are still very much in the early stages of things by the sound of it (I know it won't feel like that to you, just over nine months in maybe and a difficult time too) but sometimes arthritis can be quite hard to pin down - or rather the specific type can be. Having said that, they found a positive RF and a relatively high ESR but no anti-inflammatory? Sulph is usually one of the first drugs to be tried but it can cause trouble for some, the steroid injections will help symptoms but not 'cure', I feel you seem to be left high and dry. When my PA was at its worst (psoriatic arthritis) my knees were hot and swollen but now I have developed OA in my knees (thanks to the PA!) the pain is very different and yes, hot. It burns in the joint whereas the PA pain doesn't - but we all percieve pain differently.

This pattern of pain is kinda new to me, mine began in 1997 and has made itself right at home. I don't know what to suggest but I think you do need to see your GP again at the very least. I have been through the menopause and from what I remember the arthritis was always worse before a period, eased a tad. I was denied HRT because of the arthritis meds but I wasn't bothered about that. I preferred to get that done and dusted and after five years it was.

How long is it now until your next rheumatologist appointment? Do you have a rheumatology helpline at your hospital you could call for some advice? I apololgise for the rather incoherent answer, I have a cold and am not feeling too bonny. I wish you well. DD

Stu69

Hiya!!!

Ooooooh - sounds sooooo like me!

What a ride huh?

I had kept a diary and was diagnosed with Palindromic Rheumatism in 5 mins flat during my first ever consultation with the Rheumy dept. Prior to that it had been getting worse and worse for a good number of years.

Please Google PR or Palindromic Rheumatism - so-called because like a word palindrome, PR starts off slow, climbs to a peak of pain and inflammation, and takes about the same amount of time to die down. My flares often lasted about 2 days. The peak being 24 hours in, and that is when I cried in pain. Sometimes a toe, my foot, my jaw, both wrists, wherever it could.

From that, in the last few years my PR became RA - I had elevated antiCCP and a rheumatoid factor, both often not present in the original PR.

With the PR I used to take Sulfa (yuck) which lost efficacy after 2 years. I know inject MTX and if I do flare, they are lower now on the pain scale and go up and down within a day, so obviously the meds help.

I hope that might shed some light on what is a chronic pain condition, often not even showing any swelling or redness. Oh, and I should mention that although dx'd RA, I still think mine is palindromic, and I also only very rarely get the extreme fatigue too. It was just the elevated bloods that made my team change my meds eventually!

Stu

PS, you definitely are not mad!

Mat48

Hi DD and Stu - I feel like I've arrived somewhere very good at last! It's like being in one of those kid's books where the character asks "do I belong in here?" and there's a brief interlude as assembled company ask a few questions and huddle together and then decide "no not here - you don't belong here - not yet anyway so go and find somewhere else - shoo off you go there's a girl..!" and I shuffle off to search some more. Limbo's certainly the word I've felt in so thanks hugely for making me feel like I've at last landed on the right planet for me!

Yes I had thought of Palindromic Rheumatism Stu and read the very good home page. But is it something recognisable to all rheumatologists do you know or do some just call it early RA? I only have a low positive rheumatoid factor and I don't know whether my anti-ccp is positive or not. I see my rheumatologist for the second time in November. I have found that my GP has backed off all investigations or interest since he received a letter from the consultant. I think he may have got a discrete ticking off for assuming that this was RA and treating with the Sulfa DMARD so soon.
They both say it's unusual not to get visible swelling and redness and this seems to be what they want to see. But they aren't dismissing it as being nothing either.

I live on an island where there is no rheumatology advice or expertise and when I asked the consultant if there was a team I of nurses I could speak to he smiled at the chief Physio who was present and said "no I'm afraid not - it's a shame but there's a national shortage". I asked what would happen if I had a flare or if I was put on MTX and had side-effects. He replied that in that event I should present to my GP or the physio and if it was sufficiently visible I would go on a video link from our hospital to the mainland one. He said he needed to see me flared up to determine whether or not it was RA. He never mentioned Palindromic Rheumatism and he was very brief. I'm to see him every four months when he visits our small local hospital so that will be in November sometime.

I know it must seem a short time to you DD - but I'm sure you will understand that I feel as if my life has been turned upside down. The ensuing highs (when it goes) and lows (when it returns) are unfamiliar to me. I mean I've survived a lifetime of chronic eczema, three pregnancies, a teenager with autistic disorder and a recent string of sudden bereavements without too much going awry for me emotionally. But this uncertainty really takes the biscuit!

Thanks so much to you both for helping me on my quest to find out what's wrong while I wait for next rheumy appointment and for making me feel less alone Matx

dreamdaisy

I meant it relatively mat, I apologise. I am struggling with a cold at the moment and not expressing myself too well. :oops: I have a history of chronic eczema and asthma but that has all ceased since my immune system has been suppressed by the meds so some good has come from all this! I too wondered about RcTA but as I am not a doc I didn't want to raise it.

Ooooh, which island? We have people from all over on here, and you islanders certainly have difficulties that us landies may not. It does cause a further problem, that I can see. GPs don't usually get too involved with the meds that an auto-immune arthritis requires, they leave that to the hospital. My GP cheerfully admits that she knows very little about them and is happy to keep it that way. For my OA however, she is a star whereas the rheumatologist couldn't care less! Stick with us girl, I reckon you belong here, Arthrtitis Care produces a range of publications and the helpline is very good too. We will help you all we can with info and support. DD

Mat48

PS I forgot to say that I'm sorry about your cold DD - hope it goes away very soon

PPS Stu - why do you think your RA is actually still PR? Haven't they scanned or X-rayed you to find out? And if you think it's PR why did you decided to take MTX? I mean I'm really glad you think it's working but not sure if I would take it unless I was fairly sure it would be halting the progress of the disease in damaging my joints - but maybe we just have to trust the rheumatologists on this one? It would be interesting to know nonetheless.

Mat48

Yes it's a Scottish island (I'm being enigmatic on that one - it's too small a place) and the GPs here tend to know more and have more expertise than mainland doctors do because they have to deliver kids and fill in for long waits to see consultants etc. I have 2 friends who are GPs here so I am very aware of the pros and cons. But even my GP friend said she wouldn't have the guts to put a patient on a DMARD without the consultant's say so. He was either brave or foolhardy! He thinks I do have RA on balance but I'm holding out and exploring other avenues such as menopausal joint pain and other types of arthritis as well as experimenting with diet and exercise while I wait. Mat x

frogmorton

Hi Mat

good to meet you and welcome to the forum forum me.

You sound like me too (Stu beat me to it )

I agree look at palindromic someone called it RA with a faulty starter motor. Does that sound feasible??

There are other DMRADs apart from the sulfa and you need to try to start on one of those if you can next time you see the rheumatologist


The others will have said keep a diary....note what when how long for how much and what it affects...what pain how long for how much pain (0-10 is a good gauge) and what it stops you doing.

You are not going mad and this doesn't really sound like any menopause symptoms l have ever heard of either......not there yet either

and keep coming on here. It really helps keep you sane!

Love

Toni xx

Mat48

Thanks for the welcome Toni - I am so relieved to have found somewhere at last where I feel right - even if it's just because I don't yet know what form of arthritis I've actually got yet. I am not sure about the DMARDs now having had a bad experience with the Sulfa and I know MTX would be the next line drug offered. I'm quite scared of the next bit truth be told. I was on the NRAS forum for a while and read of too many people having nausea and hair loss while still seeming to have plenty of pain and inflammation? I know it's meant to be important to treat RA early on before the disease does damage. Call me a wimp but I want to know it really is RA before I go down that route.

Also I've had alopecia twice and plenty of skin problems and at the moment I'm told that I look well, my hair is thick and am losing weight slowly and getting exercise and consuming only very healthy foods. The exercise consists of dog walking about 5 miles a day and doing Wii fit (only started it today with my 14 year old watching on doubled up!) and, touch wood, it doesn't seem to make my joints any worse - especially if I stick to flat surfaces with plenty of grass underfoot - whereas sitting still working or lying in bed seems to freeze me and then unlocking is hellish!

Mat48

PS oh yes and thanks - `i have been keeping a diary with a 0-10 pain log but I don't think my rheumatologist was interested - in fact even having it on me at the consultation made me feel like a bit of a hypo!

But I keep it going just for me - as you say it's good to remind oneself of how far we have come or how little progress has been made etc. It's just remembering and finding time to write it up that's hard!

frogmorton

Hi Mat

l have two 16 year olds and one 13 year old....they love laughing at us dont they??!! especially if l have a go at the guitar hero

Listen l have been coping ok on hydroxychloroquinine for a good few years now with the addition of colchicine too (can be good with palindromic apparently?????). You could try requesting that one before mtx???

There's a lass on here who will email you her pain map if it's any good to you (put pain map into the search at the top of this page) might also be useful.

Finally mtx has been fabtastic for some on here - some really do swear by it so l won't rule it out if and when the time comes.

Take care

Love

Toni x

Mat48

Thanks Toni. I think my Rheumatologist is thinking about MTX as first port for me because he told me he was. Tthat's why he instigated a chest x ray. He seemed thorough and cautious so if he says MTX then I think that's what I'll do but I don't think he will automatically assume it's RA just because the pain hasn't gone away.

Re teens - mine are 19 (and half), 16 and 14 all boys and get ribbed like mad all the time! The oldest is at uni now and seems to be valuing me slightly more highly at a distance - but the other two - huh!? Last night I took the 16 year old out for dinner between a piano lesson and orchestra rehearsal and I had to get him to turn off the car ignition because my right wrist was so unbearably painful! We got into the restaraunt and looked at the menu. I told him I would have to choose something that doesn't need chopping and to which he replied "too right mum - don't expect me to chop up your food for you - at least turning on and off the ignition isn't too embarassing?!!"

I don't know - all those years of mashing and chopping and pretending the contents of a spoon are a red arrow and he won't even chop up my steak for me?! Mat x

Stu69

Hiya!

Sorry to be brief - I'll elaborate later but wanted to answer your Q regarding PR/RA migration, and your Q RE meds, before I cook dinner.

Simply I had no RF+ and no elevated antiCCP for years after the PR DX. I was using only painkillers and kidding myself it would go away. My flares got worse and worse. Then, about 3 years ago my bloods came back with RF of 67 and antiCCP of 321, hence the rheumy said it had migrated (as it can and does) to RA.

I say maybe Palindromic still because the flares are similar and variable and with multiple joint involvement. I was on Sulfa when the PR really hit hard - it lost efficacy as I mentioned, after a couple of years. The next line - and I need my joints even if I would not admit I had a problem - was MTX, and I hated the pills...they put the fear up me. I asked... yes asked... to go onto the injections. Within 2 months my flares slowed, and as it is early doors I have no significant damage, however, when I broke my wrist recently, the ortho doc mentioned he could see that I had RA as the shadowing was the tell-tale. I know I didn't want to see it, can't agree that it is what it is myself, either, but it stacks up and as a 42 year old guy I just want to take every precaution after seeing the proof of my bloods after the PR DX, and subsequent x-rays, to prolong my life with PR/RA as well as preserve my joints. Trust me - none of us want this, or the meds, and I also read about antibiotic therapy, diet control, flare triggers - the whole gamut, for years and years.

In fact - I'm still in denial to a point but I do just accept it and at least know that even if I'm not really in control as-such, of it, that it will get every salvo of treatment I can throw at the b*stard thing!

Will add to this later or tomorrow now, but suffice it to say, you are definitely in the right place!

Stu.

Mat48

I too have to pack it in for now Stu (partner protesting I'm spending too much time on laptop rather than chatting to him!) but I did just want to say that of all the responses I've had over the past 9 months yours has been the most helpful and illuminating of all - and I've had some great responses from others on NRAS and Menopause Matters so I don't say this lightly! Many thanks and good night and look forward to further dialogue here. Mat x

Mat48

Oh dear I've paid a high price for 30 mins on my son's Nintendo Wii fit today! And I worked on some fairly tight stitching yesterday also so my wrists have stiffened up severely too. I thought the pain was arbitary, regardless of the everyday activities of life for me, but it seems not? Mat

Mat48

DD, Toni and Stu - please could you advise me whether to suggest that this is Palindromic Rheumatism to my GP when I see him on Thursday? Or is it better to wait for professionals to suggest things to us do you think?

I'm convinced this is what I have but I don't know how common it is or how widely acknowledged in the UK? Most of the members on the PR site forum seem to be from the States and it doesn't seem to have that many members from what I can gage.

I am going to see him just to update him with where I'm at, ask him to take another ESR & CRP and most of all to remind him that this joint pain etc is still ongoing and to ask him to chase up my anti CCP. He's nice but not of a very sympathetic disposition and can be quite dismissive so I don't want to waste this appointment or appear too obsessed (although I am rather!). I'm sure that if I'm in pain on Thursday I certainly won't have anything to show for it as that seems to be the way it works! Your thoughts on how to play it would be most helpful. Mat 8)

elnafinn

Another thread bumped for Yoyo.

Stu has replied to this thread, Yoyo.

Elna x